All I Really Need

By Catherine Frazee and Patricia Seeley

All I really need is a song in my heart / Food in my belly, and love in my family / Yes all I really need is a song in my heart / And love in my family.
- Children’s singalong song performed by Raffi

Simple words from a children’s song - words that speak volumes about what every child needs to live and to learn and to grow. Food, shelter, warmth, protection - and, above all, the most important ingredient: love.

Children raised with love will be confident in their ability to get their basic needs met. They will form satisfying relationships with others. They will learn what they need to know about themselves and the world around them. They will grow to become informed adults, with secure and healthy boundaries.

But sometimes things go wrong. Adults do not always behave in a loving way towards children. Under stress, they can be irrational, violent, manipulative, unfair and even cruel. Child abuse occurs when a parent, family member, guardian, caregiver or other adult (teacher, doctor, neighbour, etc.) causes physical, sexual, emotional or psychological harm to a child, or places a child at serious risk of harm.

Children are totally dependent on the love and care of adults for their well-being. Ideally, this allows them to enjoy many years of unburdened childhood - years in which playing and learning are their primary tasks. The down side of dependency, however, is vulnerability. Children are unequal to adults in size, strength, knowledge and authority, and social, legal and economic power. In any contest, the odds are decidedly in favour of the adult.

For children with disabilities, both dependence and vulnerability are intensified. This fact translates to an alarming risk factor: According to some studies, children with disabilities are five times more likely than non-disabled children to experience abuse.

Catherine Stewart, a human rights specialist with a particular interest in the issue of child abuse, is also the mother of a child with a disability. She cites a variety of reasons why children with disabilities are particularly vulnerable to abuse.

"Children with disabilities are likely to be more dependent upon caregivers and other adults. Many, because of their disabilities, are unable to speak out clearly. Many are not considered credible if they do speak out.

"Widely held misconceptions about children with disabilities make them very vulnerable to sexual abuse," Stewart says. "For example, if a child with an intellectual disability exhibits sexualized behaviour (which in any other child would be recognized as a sign of abuse), the warning is often missed because of the myth that children with developmental disabilities are sexually precocious. Also, protections that are routinely in place for non-disabled children may be absent for disabled children. For example, people somehow believe it’s okay for a caregiver of the opposite sex to bathe or undress a child, regardless of her age, if she has not reached a certain level of intellectual maturity."

Stewart adds, "Another contributing factor to the vulnerability of children with disabilities is the much higher degree of compliance we demand from them. They have to be compliant in terms of caregiving, in terms of various therapies, in terms of medical and dental exams and treatments, et cetera. Schools, too, are really big on compliance."

Stewart recalls a speech pathologist whom her daughter, Amelia, was resisting. "The woman said to me, ’You just have to overrule her. You can’t just give in to her objections.’ I responded, ’Oh yes I can! I can listen to her. She’s not comfortable going alone with you. That’s the only thing she can tell me about this situation. So I’m coming too!’ The pathologist didn’t like that. In fact, she gave me a little lecture about how I should not do this. But as far as I was concerned, if I didn’t listen to Amelia saying ’I don’t want to go with this person’ - the person may be fine, no threat at all - but if I don’t listen to Amelia this time, will she express her objections another time? Or will she expect me not to listen? How else can she tell me if a person isn’t fine?"

It seems totally unthinkable. How could an adult knowingly cause harm to any child, much less a child with a disability? To make sense of this, we must keep in mind the social context in which we live - a context in which discrimination, prejudice and myths about disability are rampant.

Because of social stigma, children born with disabilities are at risk of emotional rejection by their parents. With luck, a surge of love will overbalance prejudice in the new mother, and natural bonding will occur. Much more common, however, is a mixed reaction of joy and grief. Friends and medical professionals often reinforce the grief response. And that can seriously compromise or weaken the lifesaving bond of love.

Parents may feel that they are on their own with their disabled child. Even the most loving parent may be stressed to the limit by ongoing health care needs, difficulties in finding suitable child care, financial burdens and social isolation, along with related difficulties such as depression and marital discord.

"Increased stress in a household translates directly into increased risk of child abuse," says Stewart. "Sometimes parents are abusive toward their disabled child because they are at the end of their rope. They haven’t had a break. They don’t know where to turn. As a result, they may be more coercive than they know they should be - more abrupt, rougher, whatever."

For parents who grew up in violent or abusive households, patterns of behaviour learned in childhood are most likely to recur in times of stress, despite the adult’s best resolutions.

"Parents can reduce the likelihood that they will abuse their children by learning and practising self-care," states Stewart.

Keeping our children safe from abuse is a complex challenge. There must be many elements in society’s response to child abuse, but three stand out as critical: education, respect and caring.

Education is required on many levels. To begin with, children with disabilities, like all children, need training in safety, self-protection and assertiveness. Children need to know that they have a right to protect themselves and a right to tell an adult if they are not being protected or if their needs are not being met.

As well, parents must learn about the risks and signs of abuse. According to Stewart, "Obviously, parents must be very careful about choosing caregivers. In addition, if their child has some difficulty in language or communication, parents have to watch for indirect signs. They have to really pay attention to what children say and to their behaviour."

Stewart remembers an occasion when she arrived to pick up her daughter, Amelia, after school and found that she was missing. As it turned out, she had been sent home from school on the bus, by accident. "Nobody knew where she was. It was a terrifying experience. And you know, she had said to the teachers, ’I’m not supposed to go on the bus.’ But they hadn’t listened. There is such a strong tendency to discount what children say. That’s very dangerous. We have to take our children seriously."

Education needs to go beyond children and families. Professionals of all disciplines need to improve their ability to detect child abuse and to intervene appropriately. Stewart adds that many doctors, dentists and others who provide care or treatment for children with disabilities need to rethink some of their ways of handling a child’s resistance.

"Too many professionals, instead of taking the time to explain things to a child, will use physical force to overcome resistance," Stewart explains. "This becomes very confusing for children. How are they to know when it is all right to resist or protest? We need to reflect carefully about the casual use of coercion."

Finally, communities, governments and society generally need to be educated about their responsibility for providing adequate support to families. Sensitive and responsive ways must be found to enable families to access the services and equipment they need - respite care, equipment, medications and therapies - so that parents can meet the needs of their children as well as their own needs. An investment in reducing parental stress is an essential investment for society as a whole.

"Society really has to take better care of parents," Stewart warns. "Part of what makes families and children more vulnerable to abuse is the isolation that often comes with having a disabled child. On a societal level, the degree to which parents are let down and to which families are not supported, this is a kind of socially based neglect. This isolation has to be broken down - in our schools, in our communities, in society as a whole."

If a child tells you about an abusive situation, be supportive and take the issue seriously, no matter who is implicated. Personal loyalties aside, it is your legal responsibility to report the situation. The child’s trust in you is a valuable gift. Respond with love and respect.

(Catherine Frazee and Patricia Seeley are writers living in Toronto, Ontario, and currently working at The Roeher Institute.)

This article is made possible by the Family Violence Prevention Unit, Health Canada.


WHAT IS CHILD ABUSE?

Child abuse happens whenever an adult uses his/her power or social status to exert control over a child’s body, behaviour, emotions or thoughts. Neglect is another form of abuse, in which one or more adults fail to meet a child’s basic needs.

Physical abuse. Rough handling may cause serious injury, permanent disability or death in an infant or child. Children with disabilities may be subjected to particular kinds of physical abuse, such as overdosing or withholding of medications or supports (like a wheelchair or hearing aid), deliberate infliction of painful "behaviour modification," or force-feeding at a rate that causes choking.

Emotional abuse. This kind of abuse is widespread and involves attacks upon a child’s confidence and sense of self. Insults, humiliation, rejection, degradation, exploitation, terrorization and imposition of social isolation erode a child’s ability to cope with life. Children with disabilities are subjected to emotional abuse at higher-than-average rates.

Sexual abuse. Children are not developmentally able to understand or consent to adult sexual activity. Any sexual intrusion upon a child’s body or mind is confusing and degrading to the child’s developing sense of self. Whether or not there is physical harm (as there often is), the emotional and psychological harms of sexual abuse are incalculable.

Neglect. This form of abuse occurs when a child’s needs for food, clothing, shelter, medical care, adequate supervision or protection from harm are not met. Social and educational needs are often neglected in children with disabilities. Children need opportunities to learn, to grow and to express themselves. They are entitled to feel safe, supported, valued and loved. Children with disabilities are all too frequently neglected through emotional abandonment, segregation and isolation from their peers.


THE PERSON WITHIN

The Person Within is a soon-to-be-released video focusing on the abuse that results when disability is seen through a medical lens.

"If we limit our understanding of a child to a diagnosis, we then act out our diagnosis, and create an environment where that’s all the child can be," says Dr. Sally Rogow. Dr. Rogow has practised in the field of special education for many years at the University of British Columbia and has played a lead role in this project. "Depriving a child of real education and real learning experiences is neglect, no matter what else you may choose to call it," she says.

The video features three ex-residents of an institution in British Columbia - people who were diagnosed in childhood, then neglected as a direct result of their diagnoses. All three are now living in the community.

The video is accompanied by a handbook that addresses issues of vulnerability and abuse prevention at both the personal and societal levels. Educational workshops are also part of the project plan. Both the video and handbook will be used in training programs for child protection and social workers, caregivers, medical professionals and foster parents.

The Person Within is produced by Chris Carter at Creative Media Productions. For more information about this video, contact the British Columbia Institute against Family Violence, 409 Granville St., Ste. 517, Vancouver, BC, V6C 1T2; tel.: (604) 669-7055.


RESOURCES

For supportive information or services, contact your local hospital, mental health centre, distress centre or other community service organization for children and families. Many are listed among the emergency telephone numbers on or near the first page of your telephone directory. Or speak to your local child welfare or social service agency, or the police department.

Children who want help can also call the Kids’ Help Phone at 1-800-668-6868.

The National Clearinghouse on Family Violence
Distributes publications and videos on issues of child abuse and neglect, child sexual abuse, emotional abuse, violence against women, abuse of older adults and family violence in general. Publications are available in alternate formats upon request. Also provides referral services.
Toll-free telephone: 1-800-267-1291.
Toll-free TTY: 1-800-561-5643.
Toll-free faxlink: 1-888-267-1233.
Website: http://www.hc-sc.gc.ca/nc-cn

InfoAbility
An information and referral service for vulnerable adults and their supporters in Ontario. Service is provided in English and French and translation can be arranged if necessary.
P.O. Box 1232, Stn. K
2384 Yonge St.
Toronto, ON M4P 3E4
Phone: (416) 482-4359
Toll-free: 1-800-665-9092
Website: http://www.infoability.org

Sexual Health Resource Network (SHRN)
Provides information on sexual abuse prevention and intervention for children and young people with disabilities.
Sunny Hill Health Centre for Children
3644 Slocan St.
Vancouver, BC V5M 3E8
Phone: (604) 434-1331
Toll-free: 1-800-331-1533
Fax: (604) 431-7395

The Roeher Institute
Canada’s policy research organization promoting the equality, participation and self-determination of people with disabilities. Its various publications dealing with abuse include two written in plain language:
• Out of Harm’s Way: A Safety Kit for People with Disabilities Who Feel Unsafe and Want to Do Something About It
• The Right to Control What Happens to Your Body: A Straightforward Guide to Issues of Sexuality and Sexual Abuse

Kinsmen Building, York University
4700 Keele Street
North York, Ontario M3J 1P3
Tel: (416) 661-9611
Fax: (416) 661-5701
TTY: (416) 661-2023
Website: http://indie.ca/roeher

Canadian Society for the Investigation of Child Abuse
Presents conferences, seminars and workshops on the subject of child abuse, and conducts training of child sexual abuse investigators.
P.O. Box 42066, Acadia P.O.
Calgary, AB T2J 7A6
Phone: (403) 289-8385
E-mail: info@csica.zener.com
Website: http://www.csica.zener.com